Battling the politics of cancer

[dadstimeon]

http://www.baltimoresun.com/news/health ... &cset=true

By Jonathan D. Rockoff

Sun National Staff

Originally published August 19, 2005

WASHINGTON - Even before the death of ABC anchorman Peter Jennings, advocates and scientists were organizing to combat lung cancer's image as a smoker's comeuppance and increase government funding to match other, equally deadly forms of cancer.

But they were perfectly willing to capitalize on the flurry of attention from Jennings' death from lung cancer Aug. 7 and the news a day later that Dana Reeve, widow of the late Superman star Christopher Reeve, also has the disease. There's a general recognition in Washington that funding for medical research is not driven by science alone.

"It's a story about disease politics in this country," said Cheryl Healton, president and CEO of the American Legacy Foundation, a lobbying and education group established from the proceeds of a government settlement with the tobacco settlement.

While it's still too early to say whether the latest attention will have a long-lasting impact on lung cancer research, advocates see a small but welcome sign in the government's decision last week to increase funding by $80 million over several years.

The main source of federal dollars, the National Cancer Institute, said it would support more research into smoking cessation, early detection of lung cancer and possible drugs and treatments. The announcement was part of an initiative to prevent disease or develop treatments for various forms of cancer by 2015.

"Reducing the burden of lung cancer is absolutely essential to achieving our overall 2015 goal," NCI Director Andrew von Eschenbach said in a statement.

The agency, which is working out the details, says the increase had long been in the works and wasn't driven by recent events or lobbying.

But researchers and advocates blame public attitudes for the fact that lung cancer research doesn't get as much federal funding as studies involving breast and prostate cancer, even though lung cancer kills far more Americans.

"We just haven't had the same level of patient, doctor and family advocacy," said Walter J. Curran Jr., clinical director of the Kimmel Cancer Center at Philadelphia's Thomas Jefferson University and co-chair of a new association of scientists established to coordinate research and lobby for more money.

Advocates and researchers hope the recent attention surrounding Jennings' death and the diagnosis of Reeve - a nonsmoker - will help change that.

"As we're starting to see the face of lung cancer change - women, celebrities, higher socioeconomic folks - I think we're going to start to see changes in perception and awareness," said Joan H. Schiller, a medical oncologist at the University of Wisconsin in Madison who established an advocacy group two years ago.

Each year, 160,000 Americans die from lung cancer, more than from any other form of the disease. But funding for lung cancer research, $276.5 million last year, was less than half of that for breast cancer. Prostate cancer research got $32 million more than lung cancer.

Lung cancer research advocates cite several forces at work: First, the public has long viewed lung cancer is the result of a lifestyle choice by smokers. So the focus of funding has been on preventing smoking, instead of treating those who have it. Also, because lung cancer is a killer, there are relatively few survivors who - radicalized and energized by their battle with the illness - can organize to speak out.

To change this public mindset, Curran and lung cancer research colleagues have formed the National Cancer Leadership Council. They've had two planning sessions and expect to hold the first official meeting in November.

Women Against Lung Cancer, the group that Wisconsin's Schiller established, was created to focus on the risks that lung cancer poses for women and promote research into prevention and treatment.

Another research support group, now called the Lung Cancer Alliance, changed its name, shifted its focus to advocacy and relocated from Vancouver, Wash., to the nation's capital this year. "To truly launch the movement for greater lung cancer awareness and funding, the headquarters had to be moved," said Laurie Fenton, president.

The message has also changed. Advocates and researchers emphasize that 13 percent of the Americans who die from lung cancer - and 22 percent of the women - are not smokers. Besides pointing out that lung cancer afflicts the "innocent," they marshal statistics to show that funding for research into prevention and treatment pales in comparison with cancers that cause fewer deaths.

They also speak optimistically about prospects for breakthroughs dealing with a disease that is notoriously difficult to detect early enough for treatment, and very hard to treat once it's found.

"We've focused our efforts in lung cancer on the message of 'don't smoke.' That's not very sexy," said Georges C. Benjamin, executive director of the American Public Health Association. He focuses on the benefits of finding a method for diagnosing lung cancer in its early stages.

Though research into lung cancer may lag behind others, there has been progress, scientists say.

Some are experimenting to see whether combinations of drugs and radiation therapy provide the most effective treatment. Others are studying the genetic foundations of lung cancer so doctors can tailor treatment to individual genetic profiles.

But scientists say that current funding levels keep promising lines of inquiry from being examined and turn talented young scientists away to more lucrative fields. That leads to what scientists see as a vicious cycle, with the lack of progress feeding perceptions that additional spending won't make a difference.

For example, Daniel Sterman, who directs a gene therapy program at the University of Pennsylvania Health System, applied last May for funding to continue 10 years of research into using the body's own immune system to counter lung cancer, but was rejected.

"It's novel, it's interesting. It should be the kind of program that NCI should be funding, yet we're having struggles," he said.

Sterman blames politics for the difficulty scientists face. "What is the politics on the side of lung cancer victims? There is none. There is no lobby," he said.

Researchers also put some blame on themselves for failing to develop a tool that can detect lung cancer early. That would give doctors a better shot at saving victims' lives. But lung cancer has no early warning system comparable to breast cancer's mammogram or prostate cancer's blood test.

That may change, however. Some scientists believe three-dimensional CT scans could detect lung cancer earlier than standard X-rays; others disagree. In 2002, the NCI began a $200 million study to compare the two methods, which is expected to be finished in 2009.

"There was a lot of excitement with breast cancer research in the '70s, '80s and '90s because a lot was happening. There wasn't a lot happening with lung cancer research until the late '90s. Now there is this technological opportunity emerging," said James L. Mulshine, a former NCI official who is now vice president for research at Rush University in Chicago.

[endangered but surviving]

thanks rich, now is our time to start lobbying.